What is happening to us?
Really, what is happening to us?
Last week I chaired a meeting like any other in an institution like many others.
The heads of patient experience/engagement/involvement (take your pick and delete as necessary) at a number of health organisations were there to talk about their approach to the aforementioned. All well and good.
Yet it wasn’t. Something that I couldn’t put my finger on has been nagging away at me ever since. It’s only this morning that it has become clear to me.
It’s that I couldn’t see the patient. The presentations were polished descriptions of systems, processes, priorities and objectives. Diagrams were plentiful. Jargon warped and dripped down the screen like Salvador Dali clocks. There wasn’t a patient story in sight. Not even a picture.
Shame on us. Shame on me for not challenging it at the time. My natural inclination for politeness got the better of me.
But it doesn’t stop there. Last night I looked in on the Twitter feed from the Royal Society of Arts (RSA) discussion about their new report on social movements in health care. I must read it.
The first tweet I came upon talked about system leadership and system design. Oh boy.
It gets worse. Another person talked about commissioning social movements. Really? How fun. You mean you can commission it like a self-portrait or a new conservatory? I never knew that. I thought social movements were free-spirited organisations that develop out of an urgent desire to challenge the status quo.
We are in serious danger of tipping over the edge if we continue like this. Beyond the edge is nothing but the corporatisation of the patient voice. There is no return if we go there.
I’m not convinced that patients are uppermost in our thinking across the NHS (if they ever were). In spite of all the activity and effort we seem further away than ever before. Patients can be forgiven for thinking we are in danger of disappearing up our own backsides with our organisational obsessions . Who can blame them if they walk away.
I would be aghast if a public involvement lead in the NIHR stood up and all they talked about was systems and processes. If it wasn’t clear that patients are alongside them and involved in their work.
At the Alzheimer’s Society in the 90s our starting point was always – will it improve things for people with dementia and their carers? How do we know? Have we asked? It is amazing how striving to answer such simple questions can focus the mind and direct the work. New ideas that wouldn’t get past a project manager are allowed to breathe and thrive. It makes a slave of the system not the other way round.
Whatever lies ahead for you today – a meeting, planning a project, chairing an event – ask yourself: will this improve life for patients, carers and the public? How do I know? Have we asked?
Do it and if you can’t answer them, you need to change the way you are doing things. Before it is too late.
Have a good day.
Simon Denegri
Sent from my Work iPhone
You can also find me at:
Twitter: @SDenegri
Blog: https://simondenegri.com/
Simon Denegri's Lay Review 
I think it is up to us as Patients to make a difference, and if needed, and if the NHS is to change, we must be the ones to lead that change.
We have many dedicated volunteers in the system but many of us are left out of pocket, many Trust’s say how they value their volunteers, but do not even cover today’s fuel costs.
I guess from my own experience’s you have to be persuasive, probably irritating, and downright annoying to get anywhere, and the trouble is many in the NHS have never worked any where else and certainly not in the private sector.
Every thing in the NHS takes time (too much) and time is money, and too many meetings about meetings.
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Welcome to the public sector Simon. Or should I say welcome to the NHS. You won’t solve the problem with more committees, or by exhortation. The only hope is to provide some alternative to the NHS, so people can vote with their feet. It’s a difficult sell, but people are slowly recognising the waste and self-interest of NHS providers. Revolt may happen sooner than we think.
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Interesting article on the cut backs NHS Funding for the Public Sector, communities and the Authorities services … and may I add Mental health problems, illnesses, conditions of. …etc .
We are indeed losing to somthing we can never explain. .. Mental health etc, is and will remain an Enigma.
No 2 heads with mental health etc is and never will be relate them 2 gether, I. e no 2 people are the same … that’s what separates into. … the individual = the 1 .😆
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As you know some NHS managers are not above pressurizing or bullying Patient and Lay Reps for their own ends. the system is not sympathetic either ,just look at the discrimination of reps who receive benefits , there needs to a patient whistle blowing policy in place and protection just like staff, the chair of the nhs should include this in his conflict of interest work, as managers who manipulate people are abusing their power and thats a big conflict .
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